Journal of Continuing Education in the Health Professions



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CURRENT ISSUE BACK ISSUES SUBSCRIBE ADVERTISE ABOUT JCEHP FOR AUTHORS JCEHP AWARD SEARCH (Members only) FULL-TEXT		Volume 21 (4) Volume 21, Issue 4, Fall 2001 J Contin Educ Health Prof 2001; 21(4):224-237 ISSUES IN RESEARCH Privacy, families, and human subject protections: some lessons from pedigree research Cook-Deegan RM A b s t r a c t Studies that involve getting information from people about other people, including pedigree studies, create obligations to those other people. Defining them as "human subjects," however, does not solve the ethical problems and will, in some cases, make important lines of study impractical or even impossible. The more important task is to define what the ethical obligations are and how to ensure that they are carried out. Some heuristics based on the study of families with inherited Alzheimer's disease suggest that consultation with family members and attention to confidentiality should more directly address the ethical problems than try to treat families merely as collections of people with individual rights. The individual-based approach will necessarily fail when different family members differ in their judgments about the risks and benefits of disclosing information, which will, in turn, lead to the most restrictive individual controlling what others in the family can disclose. This solution is unlikely to be supported in practice by families or researchers or to be sanctioned by the courts. The current policy of the federal Office for Human Research Protections, based on an interpretation of the definition "human subject," is incoherent and will need to be changed, preferably through a process that involves broad debate among all stakeholders but most particularly involving members of families being studied. Lessons for Practice Constructing pedigrees entails asking some members of a family for information about others. Family members will differ in what they believe is private, what they believe is proper to disclose, what the risks and benefits of disclosure are, and how important the research is. Researchers incur ethical obligations to all members of a family being studied, not just those with whom they have direct contact. Avoiding the publication of information that could harm family members is one of those obligations. The ethical issues cannot be reduced to a series of individual informed consent problems or by defining all members of a family as "human subjects" under research regulations. Trying to address the ethical problems of family study individual by individual (1) will block important lines of research by making some studies impractical because it is not generally possible to obtain informed consent from all family members and (2) fails to solve the problem raised when one family member judges the risks and benefits differently from another family member about whom he or she discloses information, which is the central problem to be solved. Defining the ethical conduct of family studies will entail (1) specifying confidentiality rules so that the risk of disclosure beyond the researchers is low and (2) consulting with family members to ensure that their interests and values are taken into account. MeSH Terms: Alzheimer Disease; Ethics Committees, Research; Genetic Predisposition to Disease; Genetic Privacy; Genetics, Medical; Human Experimentation; Informed Consent; Pedigree; Research
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